FOXG1 Syndrome Patient Association Established

On January 9-10, the FOXG1 Association held its founding assembly and inaugural general meeting at the Rare Disease Welfare Center (RDWC) for a two-day event. This gathering brought together physicians, patients, and family members to foster connections through professional sharing, diverse experiences, and in-depth exchanges, marking a significant new chapter for the FOXG1 patient community.

On the first day, the association successfully completed its founding procedures and elected its inaugural board of directors and supervisors. Led by newly appointed Chairperson Ms. Chen Yu-yun, the association officially launched, marking a new milestone for the FOXG1 Association.

The event invited Dr. Lee Wang-Tso, Director of National Taiwan University Children's Hospital, who provided accessible explanations of medical information related to FOXG1 disease. This helped parents better understand their children's conditions and future care directions.

Activities included bathing experiences, gardening crafts, and nighttime sparklers, allowing patients and families to share quality time in a safe, relaxing environment and create cherished memories.

Activities on the second day included egg harvesting, sensory integration classes, and a cultural experience with Hakka Lei Cha (a traditional drink made with ground tea leaves, nuts, and seeds), fostering shared participation and joyful interaction among patients, siblings, and family members.

During family sharing sessions, parents exchanged their journeys from diagnosis to long-term caregiving. Through mutual listening and support, they deeply felt the strength of solidarity embodied by the message “We are not alone.” This event transcended a simple gathering, laying a warm and solid foundation for the FOXG1 Association's continued support of patient families in the future.

Translator: David Lee (Becker Muscular Dystrophy)